UK Keratoconus Self-Help and Support Association

I've been seeing the same opt now for nearly 6 years and from day one have only worn soft lenses for my KC, i was given the very small(9mm) hard lenses to try but they wouldnt sit on such a steep cornea,then 12mm were tried with the same result although the vision quality was astounding.

As i've mentioned in another post a scleral lens has now been advised as the next step,however i know that this is going to take what,up to a year even for the appointments at MEH to be sorted?

My enquiry is more based around the soft lens option,i find them perfectly comfortable now i have overcome infection issues etc but vision wise they are next to useless,but in the 40-50 paris ive worn/tried in the last 6 years some have instantly given me sharper and impressive vision,obviously over time though they wear out and need replacing,and this is where the problem starts, i get seen approx every 2 months,my opt is only available to me one day of the month as he works at 3 hospitals and his practice,he orders me a set of lenses which take up to 3 weeks to arrive at my door,then if they're no good i am left waiting for my next appointment for upwards of another 6 weeks, only to go along and get the same advice as every time before, a new set of lenses ordered which arrive 3 weeks later and are exactly the same as the last pair of duds.....and so on and so on,ad infinitum.

So i have considered a sedond opinion as i feel that the fact that i sometimes recieve a "good" pair of lenses shows that a solution is possible, however i don't know how or where to pursue this path, do i have to go back to a GP or regular optician for a new referral, do i have to ask my existing opt(which would make me feel very guilty)? i'm thinking that a second opinion can't hurt so is worth it and of course is my rigth under the patients charter, but i really am stuck for a clue of how to go about it!

If it helps i live in the Beds/Cambs area

Samba,

I know some opticians once they have exhausted their knowledge have refered patients to another optom who has more experience in different lens options. When my optom could not help further and he is a senior optom at the local hospital reffered me to someone who specialises in KC and lens fitting and I soon found a lens that worked fine.

Ali Akay is well respected on this forum and I am sure he will understand if you ask for a referal to another optom that might have more knowledge in another type of lens that may help. I am sure he is very proffesional and his first priority is the patients well being.

Regards

Gareth

I'm not doubting his experience as i do find him very good indeed, he's understanding and sympathetic and does know his stuff, and it's his idea that i go for sclerals so good on him i say!


However i do feel that there may be other options,perhaps even privately but as i say, i don't really know wheree to look and i do feel it would be wrong to ask Mr Akay directly, that's just the way i am.


Anyone else?

Are you seeing Ali privately or in the hospital?

You can actually go and see any optician privately without being referred by either your GP or present optician - however, I must say that although you are reluctant to ask Ali about it, you will only be making difficulties for yourself if you don't. What I mean is here is that any new optician is really going to want to know what has been tried and how it worked otherwise you are totally starting from scratch. While this is fine for "normal contact lens wear", keratoconics are so specialised that you could actually waste a lot of time while you new optician checks out lenses that may have already been tried. You sound like you have been through lots of lenses already!

It would be sensible to discuss your problem with having to wait all the time and why the lenses he is prescribing are not working before you just up and try someone else. Its a perfectly reasonable thing to want to discuss and as he is already referring you on for sclerals, this should not be a problem. You may then get a better ides of why things are not working out.

If you do simply change practitioners, you may find you then try lots of lenses with the new practitioner, still not get sorted out and meanwhile you cornea may have changed again, influenced by the fit of the different lenses you have been trying.

If you want to go to another hospital clinic then you do have to be referred by the GP. Again, though, any new clinic would need all your previous fitting information to be of the best use to you.

Either way, to get the best option for your futher treatment it IS best to discuss it first with your current practitioner.

Lynn

Ali post here anyway, so the fact you are looking for a second opinion, he will be aware of it so you might as well ask Ali.